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Life with ITP- By Rhona Bowie

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Life with ITP- By Rhona Bowie

Rhona BowieMore often than not, in order to reflect on something, the event or experience in question usually has to be over and your thoughts, and feelings on the matter finalised. However, I must confess that my feelings on this matter are certainly not finalised, nor am I sure they ever will be. 

Immune Thrombocytopenic Purpura. By now, everybody reading this knows what ITP is. However, at sixteen years of age, when I got diagnosed, I didn’t have a clue. Our bodies attack the platelets that clot our blood, meaning we bleed constantly and freely from everywhere in the body. When it's put like that it seems almost insignificant, merely a trivial cog that has become rusted in the well-oiled mechanisms of our bodies. Although, it’s not quite that simple is it? 

Hospitals have this unique feeling about them, as if time isn't real and nothing seems quite right. Let’s be clear, no one likes spending their time in the hospital, it’s eerie and too big and is riddled with sick people. And in the summer of 2019, I became one of them. 

After undergoing weeks of stress whilst sitting my lifeguard exam, I finally went to the doctors about the weird rash that was covering me head to toe. Within days I lay in a hospital bed, confused and beyond exhausted, with a needle jammed in my arm ready for a blood transfusion that didn’t go ahead. Instead I had to take twenty steroids a day for four days in the hopes of resetting my immune system and to stop my platelet levels dropping below ten.

The hospital practically became my holiday destination that summer and even now, not once, has that eerie feeling that something’s not quite right left me every time I enter the hospital that I have become so well acquainted with. By the time that you're reading this, it will have been around a year and six months since my diagnosis. And I must admit that at the grand age of seventeen that still sounds like a tiresomely long period of time and to be truthful these past months have felt that way too. It's a hard concept to wrap your head around. That the world cannot stop and wait for you. That everyone around you will continue to move on, without you. It was a painful revelation as I lay in a stuffy hospital room with the sunlight glaring through the windows. Why did no one seem to understand that life had thrown me this curveball when I hadn't even learnt to catch yet? My ITP diagnosis forced me to come to the realisation, one I’m certain we all have at some point in our lives: that life does not stop to wait for you and the world continues to turn.

Anger. It’s a word used so frequently to describe a feeling of mild irritation that sometimes we forget how it really, truly feels. But now I can remember. How overwhelming it is. To feel anger behind everything that you do. Anger pooled in the deepest pit of my stomach, through my arms and legs, deep in my bones. First, anger at myself, at my body for letting me down at such an early stage in my life before it had truly even begun. Second, anger at the world that it kept on spinning when my own world felt like it was crashing and tail spinning into darkness. Finally, anger at everyone else. That they got to carry on, complaining about mundane everyday inconveniences. If I'm being honest, which is a challenge in itself, my view on the world changed. And not in the classic coming of age movie scene like way. I was bitter, more negative than I have ever been in my life. My patience and empathy were dwindling, things that I had always relied upon to keep me sane. Which only made me feel worse. I knew it wasn't a sound outlook to have: that I had some sort of right to feel the way I did, as though my problems were greater than everyone else's. It’s challenging, to admit to yourself, let alone someone else, the selfish thoughts you have but I know that that is only part of the process. Of grieving the person, I was and accepting this new version of myself. 

It doesn't take a genius to come to the conclusion that there is an endless list of issues in the world. Poverty, homelessness, murder, pollution, famine and disease. And that barely scratches the surface. So why was it okay to feel as though the world owed me something? As if having this illness deserved some sort of explanation as to why? Why me? Why this age? Why this particular disease? All the cliche questions. As though every single other person in the world was not also fighting a battle of their own, many far more extreme than mine. So, is it okay to feel so hard done by and kicked to the curb by life, when other people’s problems can be considered as far worse? I struggled with this concept for so long, and this is where my earlier confession reveals itself, as I still have not discovered the answer to this question. Some days my head feels calm, the tide is low, the waves slow and methodical and the sun shines. And on these days I feel like I don’t have the right to complain at the cards I've been dealt, at the sheer idea that I've been robbed from a fuller life. Then, there are the days where the tide rises, the waves are high, crashing against the rocks and the sky turns bleak to match my outlook on the world. It feels so incredibly unfair to be stuck with this illness and to have no explanation as to why. However, I’ve realised as I’m sure most people do, that unfortunately, sometimes life is just unfair, and we have to learn to run with what we’ve got.

Hope. An exceedingly dangerous emotion. It can be the only thing in the world that keeps a person going, propelling them through life and without it, we are lost. It doesn't seem right that it can be stripped away in the blink of an eye. For me it was the word “chronic” being uttered from the doctor’s lips. Although I must admit my hope of going into spontaneous remission was dwindling at each low blood result, it was still there, clinging to every fibre of my being. So to hear my worst fear confirmed, that in fact my ITP was here to stay, for the rest of my life, with no cure and nothing to help it was definitely a kick to the stomach. I think that maybe it’s difficult to reflect upon and find the answer to my burning questions because the reality has not yet hit me. That I will have this autoimmune blood disorder for the remaining years of my life on this earth. And here comes the kicker, I still don't think I have it in me to regret my illness. Initially, as I’m sure is obvious from my diary like confessions, there was a less than positive change in myself but one that was necessary nonetheless. There is a definite process, one that after you are crushed as a person and are sitting alone questioning the meaning of life itself, one must go through. Although the thing is, this process is forever ongoing, reflections forever changing and yet the world forever turning. So, I’m certain that in another few days, few weeks, few months and most certainly few years my reflections will have shifted. But for now they are as follows; life can be unfair and the sooner we realise that the better, anger is an ugly emotion but one that is occasionally necessary to move on, good days and bad days are valid and must not be underestimated and finally, hope is an emotion that we could not, and should not, live without.  

Evan's story – by Caron James

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Evan's story – by Caron James

My son Evan was an extremely boisterous 3-year-old little blondie, always on the go, always happy and loving preschool. He woke me up one night with a nosebleed, he had never had one before, so I wasn't worried, it stopped within 5 minutes, so we just carried on. A few days later, he had another nosebleed, but this time, it did not stop. I knew something was not right, so I made an emergency GP appointment, they said children's noses are extremely sensitive and prescribed some sort of cream.

We were also sent for a blood test 'just to be sure' within a couple of hours I took Evan to A&E. The consultant called us in and Evan dramatically vomited blood. The consultant pushed a button and the room was suddenly swarming with doctors, stripping Evan down to his underwear and putting in an emergency cannula, which was very traumatic for Evan. They said it looked like leukemia and my heart stopped! He was covered in petechai and bruises, even more so than the few I'd seen and put down to him being a clumsy boy.

His blood results came back while we were still in the emergency room. His platelets were 2. That is when I heard ITP for the first time, this complicated sounding illness, I'd never heard of. Evan was admitted to the ward and as we passed the playroom, Evan got excited and tried to run. He collapsed and I carried him to his bed. The doctor came in and explained the illness in more detail and said our GP had called in an absolute panic saying his patient has 2 platelets, the doctor said, "don't worry, he's already here". We watched Evan like a hawk and he slowly got less and less responsive. We called the nurses and again my boy was surrounded by doctors and nurses, they gave him fluids directly into his cannula and he eventually came round. To this day that was the scariest moment of my life, it seemed as though Evan was lifeless forever. He was given a blood transfusion and platelet transfusion and we were in hospital for 3 days. We were sent home with a bag full of medication and steroids. I was still trying to process what had happened and tried to educate myself about ITP as much as I could.

We were back and forth to hospital doing regular blood test and having consultants’ appointments. I was told Evan would likely recover from ITP within 3 months, he didn't, then I was told 6 months, still, he was struggling to maintain double figures and he was off and on steroids at varying doses and he had rounds of ivig. He responded well to treatments thankfully, but it was always a quick fix. He had a fall and hit his head badly and because he had single figures, he was sent for an MRI. They wanted me to leave him because of the radiation but Evan was scared so I refused to leave. I had to wear a bomb proof dress and neck guard and watch my tiny boy go into the biggest machine. He was so brave and laid perfectly still. There was no internal bleeding. Thank God.

After his 1-year diagnosis anniversary we were referred to the paediatric haematologist in Southampton hospital and Evans case was discussed with Dr Grainger in Manchester. We discussed treating Evan with either rituximab or eltrombopag. The decision was ultimately in my hands and I struggled with the decision. I did not want my child on any medication. He was frequently visiting hospital, he was quite a celebrity, he loved going to hospital, but was missing so much school and was beginning to fall behind. Turns out, the threat of treatment, made Evans immune system behave and his count began to rise. He managed to get triple figures without meds and just before Christmas when Evan was 7, we were told Evan was "likely in remission" it was literally all I had wanted to hear for the last 4 years! And we were all SO relieved. Evan's remission lasted 1 whole year, the following November, Evan came downstairs with blood blisters in his mouth. My heart sank, I could feel the weight of my boy’s condition hit me again like a ton of bricks. We went to hospital and his platelet count was 2. He was given 3 different courses of steroids, but each time he weaned off, his platelets would crash. Evan was sent for a lumber puncture. The results confirmed ITP which was expected but it was a relief to know nothing else was lurking. Evans count remained dangerously low, then one evening, he went for a wee and his urine was pink. We rushed him to hospital. They asked for a sample and his urine was RED. It had clots in it and I somehow managed to calm Evan who was obviously shocked and worried, the nurses in turn, tried to calm me. Evan was given steroids by IV and we were admitted. The steroids gave Evan good numbers but we were back within 8 weeks with blood blisters and he was given ivig another 4 times before the consultant said "now is the time for treatment" I had to make a decision so I discussed Evans options again directly with Dr Grainger, we spoke for over an hour and between myself, Evans consultant and the specialist, we decided to put Evan on eltrombopag. Evan was upset that he would potentially not get to go to hospital so regularly, so I bribed him with a weekend at Legoland. It has been such a relief to me that Evan has taken his condition like a champ and has not felt poorly. My philosophy is, if Evan's well, I am well. He is a strong boy and I must be strong for him. 

It took 3 months, but Evan reached triple figures and his dosage was reduced. I was comfortable with how things were going and so were the doctors. His liver function tests were coming back normal and he was having no side effects except for not being allowed any dairy after 5pm, this drug was magic. Things were great for 6 months, then on 23 march, days after lockdown and the added worry of this pandemic, Evan was covered in bruises. We called the community nurse for a blood test, his count had crashed to 23, he had not been unwell, there was no reason for the crash. His medication was increased, and his count is slowly rising. He currently has 58 platelets. I check the inside of his mouth daily for blood blisters and check for bruises. I am constantly aware of his ITP and know how unpredictable it can be. I've found the ITP support association a great source of information and assurance and I have become friends with some ITP mum's via Facebook pages, which has been so nice to talk to others who know exactly how you feel. The doctors are hoping that puberty might spur Evan into remission. I remain ever hopeful.

My 15 year’s ITP story in Portugal… and still counting by Lina Moniz

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My 15 year’s ITP story in Portugal… and still counting by Lina Moniz 

I was first diagnosed with ITP in 2005, when I was 33 years old and 7 weeks pregnant with my first child, a baby girl.  After an exceedingly difficult period in which I was put into Intensive Care and began to receive treatment with Prednisolone and intravenous immunoglobulin, with no results whatsoever, my daughter died in the womb at 32 weeks of gestation.  At that time, my platelet count was 3. After that, I stopped medication, but the problem persisted, although in a less severe manner, accounting for two digits.  

And, what next?  

Well, I am Portuguese, living in Portugal and since the beginning, I really had some difficulties dealing with my ITP. Having a scientific education, I really felt the need of further insight on ITP, I was not always able to get to my regular doctor’s appointments. However, I really felt stable over these 15 years and I have been living with a general platelet level way under 50, with some counts of one digit. Only in the last 4 years, I have developed some sporadic petechiae. Most of the time I was the one reassuring doctors that I was doing ok, they seemed to look at it with huge concern and wanted me to restart on medication, which I’ve been declining ever since. In the early years Splenectomy was also put on the table, but since I was feeling not well enough informed about the benefits and risks of this procedure, I also declined it. Unfortunately, I was also advised against another pregnancy.   

Luckily, a Portuguese doctor passed me the contact details of Professor Adrian Newland, he has been kind enough to answer some of my doubts over the years, helping me to surpass my need for information. Although Professor Newland reassured me it was possible to carry a successful pregnancy with ITP, I never got pregnant again. I never got the Portuguese doctor's consent, neither did I feel it was safe for me or my baby to do so, in the context of living in my homeland (Portugal). 

Then, again facing single figures, I have decided to do an internet search and found the ITP Support Association in the United Kingdom!  

So, so happy to have found them and to be able to join. I really found answers to many of my questions!  

So happy to realise my fatigue is not just a result of an unnamed imbalance.  

So happy to realise that quality of life is the major focus these days! I have been feeling like a lone fighter on that battle over the years and was really feeling I was starting to lose it… 

Information and support do empower people! Thank you. 

For me, one of the “good side effects” of living with ITP, has been to always have the value of life clear in your mind, and try to live it the best one can. So, I commit myself, every single day, on building a meaningful and happy life. Always looking to cut out the rubbish, really!  

So, I live as happy as I possibly can, with my lovely family of four, me, my supporting husband and companion and our beloved children, our 12-year-old loving daughter and our energetic 9-year-old son. People sometimes say, “well, they are like our own children” and we always emphasize: “They are not like our own children, they are our children, period!” So happy to be able to enjoy life!  

I would be incredibly happy if I were able to pass this on to our children, the value of looking for happiness and life's fulfilment. That is what really counts at the end of the day! 

Let us carry on! 

Life with ITP - By Shehzma Hirani

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Life with ITP - By Shehzma Hirani

I have ITP.

I have lived with ITP for over twenty years, that's half my life. After receiving first class honours at my university graduation in my early twenties in 1999, I noticed an unruly spectacle of unexplained purple bruises sprawled across my body which I ignored with indifference.  However, an over protective mother forced a GP appointment, revealing an over protective immune system, platelets in single figures (average being 150-450), which overnight, led to, unbeknownst to me at the time, a long term diagnosis of chronic ITP. Since then, it’s been my shadow through my training and career as a teacher, walking with me through my marriage and the birth of my two beautiful daughters, and now following me into my forties with a further distinction at university.

I've had relations with a range of treatments including the dreaded steroids (a destructive relationship at an impressionable age where I became unrecognisable inside and out), a splenectomy (I heavily invested in it but it didn’t work out, scarring me for life and leaving me with a lifetime of Penicillin V as a souvenir); I’ve toyed with IVIG, platelet transfusion, Tranexamic Acid, Anti D, Azathioprine (fear of long term commitment), Romiplostim (extremes in behaviour) and Rituximab (the one!).

It’s not been an easy road relapsing often at milestones in my life; writing essays whilst on a drip when training to be a teacher; three months before my wedding day, feeling far from the blushing bride; on my thirtieth in Paris; discovering blood, blisters, blemishes and bruises and requiring treatment whilst pregnant with my second child; during my fortieth when ‘life begins’, or in my case, when it comes into question, yet again. Devastating but I got through it. I had to.

I have long phases of not being well, phases of being well, and phases of somewhere in between. I've recorded every single platelet count, from 2 to 500 plus, and logged every corresponding treatment. I have journaled my journey. I am officially an ITP geek!

I don't like to be defined by my ITP but there are days when I can't see past it, I can't see beyond my own skin. Literally. When I feel low, I obsessively look in mirrors, trying to catch it, before it catches me, persistently inspecting every blemish, searching for the potential bruise from every bump, always on high alert, from when I am brushing my teeth to when I am itching my skin to inspecting red imprints of my socks on my feet. I remember as a teacher marking books and panicking when I spotted red blemishes on my hand, only to find in relief that they were the specks from my marking pen. I used to eat an abundance of beetroot (in vain that it would ‘cure’ me), and again being caught off guard by crimson fragments stuck in my teeth or stains on my fingers.

Although the nature of the symptoms has changed over the years with changes in my body, my age, changes in medication and so on, the bruises, the red dots (petechiae), and the bleeding (gums, heavy menstrual cycles, unstoppable blood from anonymous cuts, mouth blisters) remain a constant feature. What has worsened above the visible symptoms has been my well-being. When I feel my platelet count threatened, bone tired weariness and weakness can consume me from the inside out, and it can be a struggle to put one foot in front of the other. I can feel unbearable fatigue, a lack of drive and energy. My eyes grey and sink, giving me away; my hair thins, my body wilts.  I over do the make-up to feign normal.  I feel drained of everything, leading to lack of exercise, too much sleep, too little sleep, low motivation, and emotional overwhelm. I feel over sensitive, overanxious, misunderstood, breathless, nauseous in my own skin, out of control, deflated.  I envy people with their soaring energy levels and strength in their eyes.

Ricocheting thoughts engulf me. Will I need treatment or will the platelet count rise without intervention? Do I carry on, battle, defy or surrender? If I need treatment, how will I manage work and childcare? Am I actually low or am I just really tired from juggling life, or is this just how it is to be getting older? I incessantly try to find patterns of why a relapse may have occurred, scrutinising my diet, any changes I may have made; locked down in complete uncertainty and paranoia.

When I do have confirmation of a relapse, once the troublesome veins allow a blood test to give the dreaded number, life becomes complicated yet so simple.  I can go numb, on auto pilot, following procedure. I can slip into social hibernation opting out of life and relationships. Conversely, in moments of clarity and enlightenment, all the seemingly big things that I worry about pale into insignificance and I take the opportunity to re-centre, reprioritise, refocus on what is important, change perspective, readdress balance, embrace life, notice the sunset. I appreciate things around me that before may have passed me by. Maybe it's a good thing, bypassing some of the indulgences of the material world. All I want in times of feeling unwell, all I crave is to feel good, feel well enough to enjoy the world around me.

When I have longer phases of feeling well, it’s like nothing ever happened.   I can feel ‘normal’ tired and have the strength to carry life, to see things in perspective. My libido for life slowly resurrects itself. Internally, I allow myself to let my guard down gently.

Although I am beginning to notice timescales, behavioural patterns and internal influences now before a relapse, ITP at first, struck me out of nowhere. As a result of an unpredictable and ambiguous condition, I feel that I may have become a type of person or have developed particular tendencies.  I am often scared of change, scared to take risks, to try new things, to be ambitious, to follow my truth, to make plans in case I don’t feel good, in case I fail, often taking a backseat in life.  I’m cautious to trust others and to trust myself, wary of investing too much in people and relationship; scared to take knocks in more than one sense of the word, scared to say yes to life, always with one foot in, one foot out, constantly conforming and seeking external reference and affirmation; feeling defensive, protective, indecisive, fractured, compromised, lost; living in a metaphorical and physical bubble, not knowing when I will be caught off guard, overzealous, like my immune system. Is there a connection between my ITP and my emotional psyche? Which one came first? Which way round is the cause and effect? How much of my persona is due to my ITP and how much is down to my historical tapestry, my ego, my lifestyle and physical and emotional diet, is a point of reflection and awareness.

I have fought ITP as an enemy but also allied with it to achieve what to me are great things. It can be my nemesis, also my friend. I try not to become complacent or take things for granted but to use it as an opportunity to dance with life.  ITP is idiopathic, no definite cause, no definite cure.  Sometimes, I have to find my own inner cause, my own inner cure, my own meaning from within; to bow to my existence, handover, be kind to myself, live gently and without apology, unmask, accept, align with my voice, be happy, be me. My ITP calls me back to life.

I am grateful, grateful that since my diagnosis all those years ago, so much support from friends and families has been there, so much research has been done by experts which I participate in as much as I can, so many different treatments have been discovered, so many wonderful people have championed the cause; life-affirming professionals who support me inside and out beyond their remit, ‘angels’ who ensured the safe delivery of my treasured children.  When I speak to the doctors and nurses, I am heard.  Action is taken swiftly and I know that everything soon will be okay and I will get another chance.  As I sit in the haematology department adjacent to oncology, I am humbled. 

My ITP Story by: Ella Sophia Ellis

My ITP Story by: Ella Sophia Ellis

We can all have a habit of believing we’re invincible in some way or another. In particularly in adolescence, as a young fiery spirited child, full of unscrupulous energy and an innocent sense of the world, I felt this way. Growing up, I lived a pretty cush life, awesome parents, incredible family, great friends and a wealth of opportunities. But at the age of 8, my rollercoaster journey with ITP began, of which I am sharing with you today.  I hope this piece, may provide some candid knowledge of life with ITP, and particularly through the perspective of an adolescent but also offer conjure an optimistic stance on ITP, for everyone to take from.

I vividly remember, most memories as a pre-teen living with ITP. I distinctly can recall, the initial adrenalin rush, of being taken to hospital for the very first time. Directly oppositional to my parents panic stricken faces, contrasted my excitement to have time of school, lay in bed all day watching day-time TV and eat an abundance of snacks, whilst being prodded and poked by perplexed doctors. However, my enthusiasm for a relaxed bed-bound hospital life, quickly dissolved, alongside my rapidly declining platelet count.   At the age of eight years old, I began various courses of treatment, and my extensive bleeding episodes became more frequent. The dwindling moral of doctors, that as a young person I would ‘grow out of ITP’, came more infused with every unexpected hospital visit. By the tender age of 11, I had experienced possibly every symptom ITP, could hurdle at my frail body. Severe 6-hour nosebleeds, purple/red petechiae, continuous gum bleeds and mouth lacerations, and the best part- the beginning of my (Carrie horror-film like) menstrual cycle- the joy! Not to mention, the questionable extreme- bruises, that brought frequent, uncomfortable, conversations with schoolteachers, friends-parents, that left me floundering for an articulation of a disease, I did not even really understand myself. Meanwhile, I watched my parents emotionally struggle with the heart ache of being worried for their child. This ultimately hurt the most. I believe when you go through the motions of illness, even as small child, the power of your parents’ (loved ones) feelings, is deeply affectual. I tried my upmost, to keep upbeat, happy-go-lucky Ella, that had always been, previous to ITP, but my transfer to Birmingham Children’s Hospital after my local hospital became too puzzled by my condition, really hit a core.

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A sixty-five year acquaintance with ITP - By Dave Bagshaw

A sixty-five year acquaintance with ITP

It began one March evening in 1955. At about 8.00 p.m. petechiae appeared on my arms and legs, followed by bruises, blood blisters on my tongue, and passing blood in urine. Mum set off on the long walk to the phone box to call for medical help while a neighbour supervised me and my younger sister. Our G.P. visited a few hours later, took one look and pronounced that I had Purpura. It was the first time I heard the term, but it seemed apt as by then purple seemed my dominant colour.

The next morning friends walking to school were surprised to see me entering an ambulance, as was Dad as he turned the corner returning from his night shift in the steelworks. So began over four weeks in the Children’s Hospital being treated with cortisone.

I have vivid memories of the enforced bed rest; of watching the four occasions a syringe needle was forced  into the marrow of my hip and the discomfort as the contents were withdrawn; daily blood tests and the pricking of thumbs and earlobes to absorb blood onto a circular filter paper for testing; and the senior doctors pinching the bruise free areas of my torso so that their juniors and students could watch the new bruising appear. The hospital was not child friendly by today’s standards. I was allowed to sit up to eat but otherwise was expected to lie down in bed which was difficult for an eleven year old who did not feel especially ill. Parents ‘ visiting was 6.00 to 6.30 p.m. and strictly enforced. Doors opened at six and there was a two-minute warning bell for parents to say goodbye before visiting ended.

Weeks later I was at home, overweight, and moonfaced as a result of the cortisone treatment that had been administered, friends needing to look twice before recognising me.

Some doctor had told my parents that I should not participate in sport because of the danger of a recurrence of the problem. Fortunately our family doctor had the view that I should do whatever I chose to do and enjoy my childhood.

In March the following year ITP returned and led to a hospital stay of five days before my blood returned to normal. Two days later I was running in the school cross country race for my age group.

In the following years I ran middle distance track races, marathons, then some ultra marathons (55-57 miles), instructed at skiing, and canoeing, and dabbled at sailing, windsurfing, and waterskiing.

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My ITP Story - By Janet Millard

My ITP Story.

By Janet Millard

My name is Janet Millard.  I live in West Sussex and at the time I became ill I was 63 years old. My story starts in July 2017. I had been for a routine blood test at the GP Surgery on a Thursday in early July. The next day I woke to find a strange rash across my chest, but as it was a very hot day, I put it down to the heat.  As the day went on the rash progressed to other parts of my body, including legs and arms.  Baffled but not unduly alarmed, I carried on in on as usual until early evening.  On using the loo, I noticed I was losing blood, quickly followed by coughing up some blood.  Now the rash had progressed to round my neck and I was starting to feel unwell.  My family took me to the Accident and Emergency Department, where they diagnosed ITP.  My platelet count was down to 8. When the doctors looked at the blood test, I had done the day before, the platelets were in normal range, so they had literally dropped over night.

I spent the next week in hospital as my platelets dropped to zero on the Saturday night. I had a severe nosebleed that lasted for twelve hours and ended up being anaemic.  The steroid treatment I had been put on wasn’t working, for three days my platelet count refused to rise. I had three platelet transfusions, but my immune system kicked them out as fast as they went in, the doctors said I was like a leaky sieve.  By Wednesday my platelet count had struggled to 4, so It was decided to try a drug called intravenous immunoglobulins. Thankfully this worked, my platelets started to rise and by the following weekend rose to 26, the bleeding had stopped, and I was allowed home.

I had regular checkups at the haematology department, and the steroids finally kicked in and my platelets were now in normal range. After three months the steroids were stopped, and the platelets remained in normal range for four months.  I woke one morning to find bruising and a rash appearing, but thankfully this time no bleeding. The platelet count was first zero, then 17 followed by 26 before I had any treatment.  The platelets had started to rise on their own accord, so the doctors decided to give no treatment but monitor me closely. The platelets kept rising slowly and five months later in June 2018, they had reached 114.

A week later after the platelets had reached 114, I woke one morning to find bruising and a rash, I also felt very unwell, but still not bleeding. As it was a weekend I waited to the following Monday as I knew there was a haematology clinic at the hospital on that day.  When they checked my platelets, they were down to zero again. I was treated with a high dose of steroids and three months later these were stopped when the platelets were in a safe range, I was put on Mycophenolate mofetil, an anti-rejection drug, 500mg a day.  I have now been well for the past eighteen months, the Mycophenolate mofetil is still working well and the platelets are in normal range.

The latest news is that the doctors are now considering weaning me off the Mycophenolate mofetil to see if the ITP returns, or I remain stable.  They hope the immune system has been ‘tricked’ into not rejecting my platelets, but time will tell, and they can never say that the ITP won’t return.

Janet Millard, Crawley West Sussex.

Having ITP has saved my life - By Pam Brookes

Having ITP has saved my life.

By Pam Brookes

I know, it sounds ridiculous doesn’t it, but it’s true!

I was almost 57 and according to my husband, I was a few years into my menopause when I was diagnosed with ITP in May 2017. Sorry chaps, it’s one of those stories but please stick with it.

I had been to the doctors earlier in the year because I just felt so tired. I was crying at nothing and was exhausted all the time. My Doctor started a series of tests which all came back normal, reassuring but frustrating. Then I had a blood test as part of a starved glucose test.  A Doctor phoned me later that day and told me that my platelets were at 7, and I must go to A&E, they were expecting me and to take an overnight bag. At the hospital the Doctor tried to explain what 7 meant, told me that I didn’t need to stay in and made me an appointment for the Haematology clinic.  

Three day later, I was told I had ITP. What? Never heard of it. We had a long chat and I was given some reading material. It sort of made sense, the fatigue, the exhaustion but I only had one bruise, although it was odd to bruise from carrying a shopping bag with a loaf in it.

I started where everyone starts, steroids, 70 mg. I piled on so much weight but at least they were working. However, my platelets kept crashing down into single figures every time the dosage was reduced. By the November it was decided that I would start Romiplostim. Because of my weight, I had 5 injections every Friday. It was less painful to give myself 5 injections rather than having them all in one syringe.  The injections worked initially but then I dropped back into single figures. Eltrombopag next. Again, it worked initially but then back down to 7 so back to the injections. I did have the odd week over 100 but mostly I was below 30.

It was now June 18 and I was bouncing along in single figures. That was when the operation to remove my spleen was first mentioned as the drugs just weren’t getting my numbers up to anything near a safe level.

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I Have ITP- but it doesn’t Have Me by David Farrow

I Have ITP- but it doesn’t Have Me.

By Dave Farrow

I developed ITP and neutropenia (loss of some white cells) way back in 1993.

Over the years I’ve had most treatments available including a splenectomy which did not work. Twenty-seven years later I still have the two conditions lurking in the background somewhere but thanks to treatment with various doses of Mycophenolate and a caring Haematologist that I can talk to, my counts have remained stable for several years now.

However, I have had to help myself too. In the early days I was stressed out and often looking for new bruises that were not always there. The large doses of prescribed steroids were driving me crazy and my loss of white cells made me vulnerable to infections. I knew that I had to somehow take charge and develop some coping strategies. I thought It time I shared some of these with others.

I was not feeling well and had been in and out of hospital during my first year, but I thought it important to learn all I could about the Immune system and the enemy within that was sometimes attacking my platelets. The immune system is complicated, so I tried to keep to the basics at first. I sought Information from books and explanations from health professionals. I never really met another person who had ITP in those days. The ITP support organisation didn’t exist in 1993. I was one of its early members. Later it became a great source of information and of course much more is known about ITP nowadays.

At first, I was stressed out by it all but after a while I thought it best to become a patient, patient! As all patients know we spend a lot of time waiting to see Doctors and others. I go prepared with something good to read. I get to know staff and other patients. I became patient about results too. I learned not to expect rapid, long lasting, positive results from treatments.

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